Belle was reclassified

[Guest guest]

Hi friends , Belle just had her five week check up after her hip

injection and we left the appointment with her being reclassified ( we

expected that) .The nurse just called me with test results and loaded

me up with new information, so now I have a ton more questions! I

figured you could all clarify things for me. The Dr. reclassified

her " Psoriatic " but after talking to the nurse she is thinking maybe

with further investigation that she will be reclassified again

with " Spondy " … I don't know any more . They told us at the

appointment that since she's B27 negative she will likely not grow out

of this ~ what an awful thing for her to hear. Besides all of that

she's doing GREAT ! Belle has NO HIP PAIN what so ever since the

injection , the down side is that it has started affecting her knee

and shoulder ( all the same side) . I guess I just need you all to

tell me that all of this is normal JRA Doctor garbage . We are on our

third doctor in the rheumy clinic now , so I'm thinking that now that

we have a Doctor that is going to stay around maybe we will get a firm

classification .

Teri ( Belle 10 3/4 y/o )

[Guest guest]

Teri,

It is common for girls with only a few joints to be classifies as Pauci.True pauci happens with very young girls.

What is most likely going on and is not known until later is usualy these girls have a type of spondyloarthropy.Psoriatic arthritis is a type of spondy and it is good that Belle is HLA B27 negative.Disease course is usualy milder with less complications in the long term.

Spondy and JRA are basicly treated the same only there are certain NSAIDS that work better and the use of Sulfasalazine works realy well for some.

Hope this helps some.

Hugs

Becki and 7 systemic

[Guest guest]

Teri,

Your so right.What is most important right now is that Belle is feeling great and things are under control.

Don't be too shocked if they do reclassify again.The spondyloarthropathies consist of several diseases that have somewhat the same pattern.They include enthesitis-associated arthritis, juvenile ankylosing spondylitis, SEA syndrome,reactive arthritis,infection-associated arthritis,Reiter's syndrome,psoriatic arthritis,IBD and Celiac disease.

Many of these diseases do not show any other outward symptoms for several years later.In the instance of psoriatic it could be 10-15 yrs after the onset that someone develops psoriasis.You can't be classified as having AS until you have fusion which doesn't usualy happen until the 30's.

Lots of rambling here.Just keep treating the symptoms no matter what type of arthritis it turns out to be.

Love and hugs

Becki and 7 systemic

[Guest guest]

was also reclassified 6 months after his diagnosis. His current

rheumy alternates between pauci and spondy so I just say he is both.

Anyway, psoriatic and spondy have many similarities. Both of the

rheumy's he has seen have often thought he had psoriatic arthritis, but

have finally stuck with spondy. It is true that with the negative HLAB

27 she is less likely to have the organ problems and such that can go

with spondy. However, with spondy you are less likely to outgrow that.

You can check the website www.spondylitis.org That may give you some

more info. Hope this helps, Michele ( 18, pauci & spondy)

Belle was reclassified

Hi friends , Belle just had her five week check up after her hip

injection and we left the appointment with her being reclassified ( we

expected that) .The nurse just called me with test results and loaded

me up with new information, so now I have a ton more questions! I

figured you could all clarify things for me. The Dr. reclassified

her " Psoriatic " but after talking to the nurse she is thinking maybe

with further investigation that she will be reclassified again

with " Spondy " ... I don't know any more . They told us at the

appointment that since she's B27 negative she will likely not grow out

of this ~ what an awful thing for her to hear. Besides all of that

she's doing GREAT ! Belle has NO HIP PAIN what so ever since the

injection , the down side is that it has started affecting her knee

and shoulder ( all the same side) . I guess I just need you all to

tell me that all of this is normal JRA Doctor garbage . We are on our

third doctor in the rheumy clinic now , so I'm thinking that now that

we have a Doctor that is going to stay around maybe we will get a firm

classification .

Teri ( Belle 10 3/4 y/o )

[Guest guest]

Thank Becki,

When we were first told Belle was pauci we studied and looked up

everything we could find and she never quite fit into that grouping

but we figured " the doc's know best " - know Im thinkung Mom's are

right up there ! The inportant thing is that she feels great today ,

prayer and med's are working .Have a great day , Teri

> Teri,

> It is common for girls with only a few joints to be classifies as

Pauci.True

> pauci happens with very young girls.

> What is most likely going on and is not known until later is

usualy these

> girls have a type of spondyloarthropy.Psoriatic arthritis is a

type of spondy and

> it is good that Belle is HLA B27 negative.Disease course is usualy

milder

> with less complications in the long term.

> Spondy and JRA are basicly treated the same only there are certain

NSAIDS

> that work better and the use of Sulfasalazine works realy well for

some.

> Hope this helps some.

> Hugs

> Becki and 7 systemic

[Guest guest]

Thanks Michele ,

You always have good information , I will visit that site soon. I

guess I was a little wigged out yesterday after talking to the nurse

and my husband is at Boy Scout camp all week so I had no one to

bounce these questions off of … thanks for being here ! We have

learned that there are only certain " friends " we bring up Belles JRA

issues with . After all she has gone through there are still people

that aren't quite sure this is real or painful or scary . this

board is a God send , Thanks

> was also reclassified 6 months after his diagnosis. His

current

> rheumy alternates between pauci and spondy so I just say he is

both.

> Anyway, psoriatic and spondy have many similarities. Both of the

> rheumy's he has seen have often thought he had psoriatic

arthritis, but

> have finally stuck with spondy. It is true that with the negative

HLAB

> 27 she is less likely to have the organ problems and such that can

go

> with spondy. However, with spondy you are less likely to outgrow

that.

> You can check the website www.spondylitis.org That may give you

some

> more info. Hope this helps, Michele ( 18, pauci & spondy)

>

> Belle was reclassified

>

> Hi friends , Belle just had her five week check up after her hip

> injection and we left the appointment with her being reclassified

( we

> expected that) .The nurse just called me with test results and

loaded

> me up with new information, so now I have a ton more questions! I

> figured you could all clarify things for me. The Dr. reclassified

> her " Psoriatic " but after talking to the nurse she is thinking

maybe

> with further investigation that she will be reclassified again

> with " Spondy " ... I don't know any more . They told us at the

> appointment that since she's B27 negative she will likely not grow

out

> of this ~ what an awful thing for her to hear. Besides all of that

> she's doing GREAT ! Belle has NO HIP PAIN what so ever since the

> injection , the down side is that it has started affecting her

knee

> and shoulder ( all the same side) . I guess I just need you all to

> tell me that all of this is normal JRA Doctor garbage . We are on

our

> third doctor in the rheumy clinic now , so I'm thinking that now

that

> we have a Doctor that is going to stay around maybe we will get a

firm

> classification .

> Teri ( Belle 10 3/4 y/o )

>

>

>

>

>

>

>

[Guest guest]

You're welcome Teri. I feel the same about this board. Most people do

have no idea and I am often at a loss to explain my feelings about all

of this. The people here are such a great support, whether I have needed

info, or someone to tell me not to worry about some things. Glad I could

help!

Belle was reclassified

>

> Hi friends , Belle just had her five week check up after her hip

> injection and we left the appointment with her being reclassified

( we

> expected that) .The nurse just called me with test results and

loaded

> me up with new information, so now I have a ton more questions! I

> figured you could all clarify things for me. The Dr. reclassified

> her " Psoriatic " but after talking to the nurse she is thinking

maybe

> with further investigation that she will be reclassified again

> with " Spondy " ... I don't know any more . They told us at the

> appointment that since she's B27 negative she will likely not grow

out

> of this ~ what an awful thing for her to hear. Besides all of that

> she's doing GREAT ! Belle has NO HIP PAIN what so ever since the

> injection , the down side is that it has started affecting her

knee

> and shoulder ( all the same side) . I guess I just need you all to

> tell me that all of this is normal JRA Doctor garbage . We are on

our

> third doctor in the rheumy clinic now , so I'm thinking that now

that

> we have a Doctor that is going to stay around maybe we will get a

firm

> classification .

> Teri ( Belle 10 3/4 y/o )

>

>

>

>

>

>

>

[Guest guest]

Hi Teri,

You already have received wonderful info so I don't have much to add. Just wanted to chime in that the classification thing seems to change as the disease does. And as Becki and said the main thing is that you are treating it. The treament is essentially the same so that is what matters most. My daughters classification has been all over too. Some people fit the textbook version better than others. As a side note I have an 8 year old boy who has some neurological deficits and issues. At the beginning I was adamant (sp?) that they not label him as autistic because I felt that it didn't really explain him and was just the fashionable label of the day and if it the doc couldn't figure it out then this is what he labeled the child as. But then I spoke with a very wise friend who explained to me that it really didn't matter what they labelled him as along as they found a good treatment plan. It finally hit me as truth and I really don't care about his million labels that

don't reflect who he is, but the neurologist found a treatment plan that works and that is what matters. It is the same with my daughter. She has had some strange classifications but they are treating her and it is helping (not perfect she is at symphony camp and dying but I found a doctor and therapy clinic in Seattle that is called the Clinic for Performing Artists that I am taking her to in a couple weeks). So, I guess in all my wordiness I want to tell you is we call it JRA and leave it at that and treat the symptoms. Does that make sense.

The main thing is that you say Belle is doing great and that is awesome. As for the not growing out of it, I don't think docs are so into the fact of telling people they will outgrow it as they did in the past. One of my best friends in high school has been symptom free for over 20 years, it may raise its ugly head again but she is enjoying these years. My grandpa never did outgrow his but those were different times. I think that because of the advances in medicine our children have the best chance of succeeding to the best of their ability than any children before them. Wow, my soap box persona is flowing today! Okay, enough from me. Best wishes on continued awesome days!

e, mom to joe 18 poly + ?

Teri <branx4@...> wrote:

Hi friends , Belle just had her five week check up after her hip injection and we left the appointment with her being reclassified ( we expected that) .The nurse just called me with test results and loaded me up with new information, so now I have a ton more questions! I figured you could all clarify things for me. The Dr. reclassified her "Psoriatic" but after talking to the nurse she is thinking maybe with further investigation that she will be reclassified again with "Spondy" … I don't know any more . They told us at the appointment that since she's B27 negative she will likely not grow out of this ~ what an awful thing for her to hear. Besides all of that she's doing GREAT ! Belle has NO HIP PAIN what so ever since the injection , the down side is that it has started affecting her knee and shoulder ( all the same side) . I guess

I just need you all to tell me that all of this is normal JRA Doctor garbage . We are on our third doctor in the rheumy clinic now , so I'm thinking that now that we have a Doctor that is going to stay around maybe we will get a firm classification . Teri ( Belle 10 3/4 y/o )__________________________________________________

[Guest guest]

Teri:To add to Becki's post, my son was classified originally as SEA syndrome, then to spondyloarthropathy. Just recently we found out he has fusion so now he is officially juvenile ankylosing spondylitiis. Regardless, the treatment is the same.

I also attended AJAO last year in San Diego, and heard a doc talk on spondy. He said that many of the kids with large joint disease (hips and knees, and the pelvic area), are sometimes originally thought to have poly or pauci but end up being actually spondy or even psoriatic. Time tells, that is for sure.

Best of luck with Belle continuing to feel well and be controlled. As far as the not growing out of it, yes, spondy and the related diseases like psoriatic tend to be a lifelong battle. But I am hopeful that more meds will be developed for better control.

and Rob 16 Spondy

On Fri, 29 Jul 2005 16:00:17 EDT Arthurnator@... writes:

Teri, Your so right.What is most important right now is that Belle is feeling great and things are under control. Don't be too shocked if they do reclassify again.The spondyloarthropathies consist of several diseases that have somewhat the same pattern.They include enthesitis-associated arthritis, juvenile ankylosing spondylitis, SEA syndrome,reactive arthritis,infection-associated arthritis,Reiter's syndrome,psoriatic arthritis,IBD and Celiac disease. Many of these diseases do not show any other outward symptoms for several years later.In the instance of psoriatic it could be 10-15 yrs after the onset that someone develops psoriasis.You can't be classified as having AS until you have fusion which doesn't usualy happen until the 30's. Lots of rambling here.Just keep treating the symptoms no matter what type of arthritis it turns out to be. Love and hugs Becki and 7 systemic